What I'd Like The (EB) World To Know About Autism/ASD
In honor of Autism Awareness Month

Thanks to all who kept this thread active for Autism Awareness Day. To ensure that as many parents as possible see this important information during Autism Awareness Month, please help us keep the dialogue going with a comment, question, or a bump. Thanks!

Dear Fellow EBers:Saturday, April 2nd, is World Autism Awareness Day and the month of April is Autism Awareness Month. Last year, in recognition of that event, I and some of the other mothers of kids with ASD started a general awareness thread on the WDYT board.

We ended up getting a lot of great questions from other parents, and it stimulated a very healthy and respectful discussion about what is now the most common developmental disorder in Australia. Most importantly, because of that thread and other related information shared on EB, dozens of parents have recognized the signs of ASD in their own children and have been able to get them properly assessed, diagnosed, and on the path to support. So who says EB is all cat fights and youse all are b*tches?!

But despite all of the ASD talk on EB, there are still a lot of myths and misconceptions floating around. Some of them are mildly irritating (“All kids with autism are good at math.” “All kids with autism have savant skills.”) while others are totally inaccurate (“Every second kid is being diagnosed with autism these days,” “If you miss the window of early intervention, there’s no hope.”) And some are just plain hurtful – like the false belief that violent behaviour is a cornerstone of autism or that autism can be “cured” by better parental discipline.

There is so much that I want each of you to know about autism spectrum disorders (ASD), but I will limit myself right now to my top priority – helping parents understand the warning signs. I hope others will join in with their own thoughts and questions.

With deepest thanks,BMJ***Understanding and Recognizing The Warning Signs of ASD

When I first started worrying that something was “different” about my daughter, lots of things entered my mind, but autism wasn't one of them. My knowledge of autism was pretty much confined to stereotypes -- all people with autism are either trapped in their own worlds or reciting baseball trivia like Rainman. My daughter was nothing like that! How could she have an autism spectrum disorder?!

What I didn't realize at the time is that ASD comes in so many different shades. It's called a spectrum precisely because the blend of symptoms, and the degree to which they affect a person, can vary dramatically. What people with ASD share are: (1) difficulties in social interaction, (2) difficulties with communication, (3) restricted/repetitive interests and behaviors. Very often, they show some sensory sensitivities as well.

This is one of the best, easy-to-digest summaries I’ve seen on describing the spectrum (thanks, ZombieMum!) If you read nothing else on this thread, please take a look at this:

Looking back, it's clear now that my daughter actually displayed several early warning flags of ASD as a baby and toddler -- I just didn't appreciate the link. At the same time I had these niggling concerns about her development, I was surrounded by well-intentioned friends, family, and even some front line medical professionals assuring me that she was just "quirky," "gifted," and "marching to the beat of her own drummer." Had I known the red flags of autism, I would have placed more urgency on seeking the opinion of a specialist.

For those of you reading this who might see your own child or a child you love in these descriptions, I hope this note will provide a gentle prompt to get those concerns checked out. Getting a developmental screen with a GP or MCNH is a good first step. They might then refer you on to a specialist (e.g. developmental paed, child psychologist) to do further assessments.RED FLAGS FOR ASDEarly Warning Signs (Baby-Toddler)Below are some of the early warning signs – usually seen in the first two years – of ASD. Some children will have many of these early warning signs, whereas others might have only a few. Also, any loss of social or language skills during this period is cause for concern.SocialThe child:* doesn’t consistently respond to her name* doesn’t smile at caregivers* doesn’t use gestures independently – for example, she doesn’t wave bye-bye without being told to, or without copying someone else who is waving* doesn’t show interest in other children* doesn’t enjoy or engage in games such as peekaboo or patty cake.

Communication The child:* doesn’t use gestures – for example, she doesn’t raise her arms when she wants to be picked up or reach out to something that she wants* doesn’t use eye contact to get someone’s attention or communicate – for example, she doesn’t look at a parent and then look at a snack to indicate she wants the snack* doesn’t point to show people things, to share an experience or to request or indicate that she wants something – for example, when she’s being read to, she doesn’t point to pictures in books and look back to show the reader* doesn’t engage in pretend play – for example, she doesn’t feed her baby doll* doesn’t sound like she’s having a conversation with you when she babbles* doesn’t understand simple one-step instructions – for example, ‘Give the block to me’ or ‘Show me the dog’.

BehaviorThe child:* has an intense interest in certain objects and becomes ‘stuck’ on particular toys or objects* focuses narrowly on objects and activities such as turning the wheels of a toy car or lining up objects* is easily upset by change and must follow routines – for example, sleeping, feeding or leaving the house must be done in the same way every time* repeats body movements or has unusual body movements such as back-arching, hand-flapping and walking on toes.

SensoryThe child:* is extremely sensitive to sensory experiences – for example, she is easily upset by certain sounds, or will only eat foods with a certain texture*seeks sensory stimulation – for example, she likes deep pressure, seeks vibrating objects like the washing machine, or flutters fingers to the side of her eyes to watch the light flicker.

Signs of possible ASD in Preschoolers: With some children, the red flags might not become entirely obvious until they reach preschool (or even school age), when suddenly the developmental gap between them and their peers becomes more pronounced.

Some of the more common characteristics of ASD in preschoolers include (note: list is simply representative, not exhaustive. Also, a child with ASD may not display all of the signs on this list – mine sure didn’t!):

*Unusual responses to other people. A child may show no desire to be cuddled, have a strong preference for familiar people and may appear to treat people as objects rather than a source of comfort. *The child tends not to look directly at other people in a social way. This is sometimes referred to as a lack of eye contact.* There may be constant crying or there may be an unusual absence of crying.* The child often has marked repetitive movements, such as hand-shaking or flapping, prolonged rocking or spinning of objects.* Many children develop an obsessive interest in certain toys or objects while ignoring other things.* The child may have extreme resistance to change in routines and/or their environment. * The child may appear to avoid social situations, preferring to be alone.* There is limited development of play activities, particularly imaginative play. * The child may have sleeping problems.* Food problems. The child can be resistant to solid foods or may not accept a variety of foods in their diet.* There may be an absence of speech, or unusual speech patterns such as repeating words and phrases (echolalia), failure to use 'I', 'me', and 'you', or reversal of these pronouns. * There are often difficulties with toilet training.* The child generally does not point to or share observations or experiences with others. * The child may be extremely distressed by certain noises and/or busy public places such as shopping centers.

Signs of possible ASD in school-aged childrenIt is not uncommon for ASD to go undetected until school age, especially with kids who have higher functioning forms of ASD. And ASD can be masked by giftedness. Here are some of the more common ways that ASD might present itself in a school aged child (again, list is representative, not exhaustive and not every child with ASD will show every sign):

Communication problemsThe child may:• have had unusual language development when they were younger (used language that is different to that used by other children their age);• sound unusual when they speak;• repeat words or phrases that they have heard rather than responding to them;• refer to themselves as “you,” “she” or “he” after the age of three;• use unusual words for their age; or• use only limited language or talk freely only about things that interest them.

Social difficultiesThe child may:• not be interested in playing with other children;• try inappropriately to join in with other children’s play (for example, your child might seem aggressive);• behave in a way that other people find difficult to understand (for example, they may not do as they are told);• be easily overwhelmed by being around other people;• not relate normally to adults (for example, they may be too intense or not have any relationship at all); or• not like people coming into their personal space or being hurried.

Difficulties with interest, activities, and behaviorsThe child may:• struggle to take part in pretend play with other children or play in which they need to cooperate or take turns;• have difficulties in large open spaces (for example, they may stay round the edges of the playground);• find it hard to cope with changes or situations that aren’t routine, even ones that other children enjoy (for instance, school trips or the teacher being away).

Other factors:The child may:• have unusual skills (for example, have a very good memory or be gifted in math or music); or• not like the sound, taste, smell, touch of certain things.

WHAT TO DO IF YOU HAVE CONCERNS If you have concerns about your own child's development – be it for ASD or some other issue – I urge you to seek professional guidance. Again, your MCHN/ECH or GP can provide a developmental screen -- with specialist support most commonly delivered by developmental paeds (or child psychologists or psychiatrists).

There are some terrific resources to help guide parents in their journey. Two particularly valuable ones in Australia are:

When you actually get the courage to realise that you child may have Autism (or be on the Autism spectrum) it takes months, even years to get diagnosed. The whole process is a rollercoaster, and it doesnt help when people make harsh remarks regarding Autism.

I never knew my son was 'different' his preschool teacher pointed it out to me. I cried, was angry but we know now that a diagnoses is a good thing. He can get the help that he needs.

I had 3.5yo DD1 assessed late last year and whilst she didn't meet the criteria, we still have daily battles with some aspects of her behaviour. She is developing well in lots of ways but will always be special and requires a particular approach to get her through many day to day activites without it becoming and overwhelming drama.

Thanks to BMJ for all your informative, helpful and supportive posts throughout this forum.

It's not the end of the world, it doesnt mean that your child is incapable, or that they are insufficient. My brother was diagnosed at 4 years old, and it was tough, my parents had to fight every step of the way to get him support and assistance. He's now 28 years old, and while he still has to deal with the ASD everyday and lives at home with mum for support, he holds down a full-time job, he has a huge network of friends, he has a better social life than I do! I know my brother is towards the high-functioning end of ASD, but my mum and dad never thought he'd be able to get a job, or have a real life.

What I would like everyone to know is that my father has Asperger's. As a child I didn't know what this meant just that my daddy was different to other kids dads. As dad is a couple of years over 60 when he was a child they just diagnosed him as having a learning disability and behavioral problems. He lived with this his whole life not really understanding what was diagnosed when he was a child. move on 50 years and he now works as a disability support worker and loves his work. One of his bosses actually mentioned that they thought that he might be high functioning autism. So dad got a hold of his records from 50 years ago and then had more testing down in Sydney where they diagnosed him as Asperger's. My dad is an amazing person that is at university doing a social sciences degree. This is the first time that hes ever completed a university degree because now that he (us and his lecturers) know how his thought processes work everyone has been able to make little changes to help him achieve his goals! I can only imagine how challenging life would be for people with children who have ASD, and as a child of someone with ASD its challenging but my dad is great and I wouldn't change him or his little ways for anything. Thankyou for posting on such an important topic.

You're such a great advocate of Autism education in the community, love ya work BMJ (and glad you found it within to do this despite dips along the way with peoples reaction to being informed).

Even if one family is triggered to seek help for things they are worried about, you have done a very good thing.

Thanks, again!

ps, My one point about ASD is that, YES adults are like it too, they just haven't been diagnosed. We don't have a sudden 'epidemic', we just have evolved understanding of different brain types needing different communication, interaction & relationship approaches. So if you have a quirky/odd/awkward friend or teacher, stop for a moment and reflect on whether they are being personal, or, it is in fact just who they are and their view of the world (and not meant to hurt/offend you).

DS was referred to a speechie not long after he turned 2. He has verbal apraxia. The speechie mentioned autism as he didn't make eye contact with her but I dismissed the idea as the thought horrified me. I told some friends who said no, he can't have autism, look at him, he is so friendly. He's actually a flirt with long eyelashes and beams at anyone who looks at him.

Middle of last year he started going to an Early Childhood Development Unit run by Education QLD which is for kids with social/communication problems. The idea is to get the kids ready for school by teaching social skills and learning how to behave in a class eg sitting still for a short time and paying attention to teacher. After a few months and learning more about the other kids who have ASD, I realised so did my little boy. It was very hard to accept and the formal diagnosis of autism shattered us.

Having said that, the diagnosis allowed us to get the help our son needed. We're broke but we get funding which pays for his speech and OT. He's still at the ECDU and will be there until he starts school. He also gets an aide at kindy which is paid for by Noahs Ark Foundation. Most importantly, our little boy is making progress with his speech, his social interaction skills with other kids has improved enormously, and while some areas of his development are poor, we can help him improve.

Yes it is a lot of stress and I keep getting told this is the age to help him. Some days are rough but he is worth it. I can see a future for my son and its a good future. He will always look at the world differently but he will make lots of friends and be a part of this world in a positive way, for him and others.

Thanks BMJ for all your hard work increasing awareness of ASD and for continually giving support/advice despite some of the negative and ignorant comments you receive.

Thanks so much for the support. EB has proven to be a really effective way to reach parents of kids who might need support, and there is also an amazing, helpful special needs community here that has been such an important part of our journey.

For parents whose kids have recently been diagnosed or who worry that their child might have ASD, please don't lose hope. With the right kind of support, there is so much that can be done for kids (and adults!) on the spectrum.

Re: what to do if you have concerns about someone else's child...

I can't speak for every mother on this point. For me, I appreciated that two of my more "ballsy" friends who knew my daughter well and had meaningful links to early childhood development had the courage to push me to get her assessed. Other parents might find that totally confronting and offputting.

What seems to be a good middle ground is offering all parents the encouragement to get their concerns checked out with a professional. GPs and MCHNs can do developmental screens that are neither expensive or time consuming and refer them on to a specialist if needed.

Additionally/alternatively, I'd be happy to send you a copy of the "Know The Signs" email I send out to my friends each year on Autism Awareness Day. You could then forward it to your network of friends with children -- not just the ones you are worried about -- in an effort to raise awareness across the board. Please PM me if you'd like me to forward that note to you.

Sorry, I am in a super hurry so haven't had a chance to read all the replies yet.. Will spend the weekend catching up.

What I would really like people to know about Autism is that a person need not have all of the "red flags" to have ASD. My son (now 5), for example, has Pervasive Developmental Disorder — Not Otherwise Specified (PDD-NOS). In a nutshell, that means that he has enough traits to be diagnosed Autistic but not all of them. I often get remarks such as "But he makes eye contact; he can't be Autistic!" and "But he's so affectionate!"

Yes he does and yes he is. He also, flat out, cannot stand loud noises and bright lights, cannot hold a pencil to save himself, can't work out how the hell to put a shirt on, collects bizarre, bizarre things and can name every car on the road - make, model, type of wheels ect (and has been doing so since the age of 3.) He can look in the sky and tell you which airline the plane belongs to and which ones fly where. He knows the temperature of molten lava, the wind speed of a hurricane versus a tornado and how long the Great f*cking Wall of China is. Additionally, he will tell you all of these things, and more, whether you want to know them or not.

He is the most tender, sincere and loving little guy I've ever known. He will hold your face and tell you you're beautiful and that he loves you. He is the one who takes care of the frightened new kid at school and holds his hand; explaining that Mum will come back soon. He is funny - downright hilarious, in fact! - and loves being silly.

But he is mine. There are days that I could've driven my car away, away, away.. Until nobody would ever find me again and there are days that I cannot get enough of him.

I guess that what I'd like people to take away from this is that not all kids with Autism are the same. In fact, they are very different - not to mention, quite unpredictable! Just when you think you have some of the issues sorted, BOOM, along come some new ones.

I would like the world to know that adults have it and get diagnosed with it too. Most of the focus is on kids at the moment and that's fine, but some people seem completely oblivious to the fact that it stays with you for life.

The struggles faced by adults with ASD (who were diagnosed as adults) may not be so obvious because the person has learnt to adapt and act (which is immensely exhausting, by the way), but that doesn't mean they're not happening.

I don't expect people to know what to say, but I draw the line at being asked "should people like you have children?".

I too would like to draw attention to the fact that children with ASD don't grow out of it. they grow up and become productive members of society and parents themselves. I would ask those of you who help secure funding for children with ASD turn a thought to Adults who go unsupported through out their lives and write a letter to your local member asking for more funding to be put toward Adults with ASD and thier families.

Also having ASD DOES NOT mean not haveing feelings. People with ASD can love and be careing.

I too would like to draw attention to the fact that children with ASD don't grow out of it. they grow up and become productive members of society and parents themselves. I would ask those of you who help secure funding for children with ASD turn a thought to Adults who go unsupported through out their lives and write a letter to your local member asking for more funding to be put toward Adults with ASD and thier families.

Thank you -- that is such an important point.

One of the reasons why early detection and diagnosis of ASD is helpful is precisely because most of the current funding and support is directed toward young (under school aged) children. While there can be enormous benefits from early intervention, it's not as if ASD magically disappears when a child hits age 7. ASD is a lifelong condition.

It's important that we as a society recognize the importance of providing adequate support to people with disabilties/their carers not just when a child is young but for a lifetime.

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